On April 7, 2011 I had an AVM rupture that caused a massive stroke. I was 30 years old at the time and I had just come back from a trip to Africa and announced my desire to move there permanently as a missionary. I was at work (I was living alone outside of Portland, OR so I could be near to the office) when my brain bled so I got help right away. Over a month later I woke up with a tube sticking out of my tummy, weird hair aberrations, and the inability to walk. Stubbornly, I refused to believe the story about why I had to live in the hospital and the fact that I couldn’t control my body parts. Comedic scenes ensued. At least they’re funny for me in retrospect – I don’t know that they were very amusing for me or my medical providers at the time. This blog chronicles my daily adventures in the wild wild west known as RecoveryLand with occasional glimpses of what my life used to be like.
For more information on the story of my recovery so far, go to www.annninglearninghow.com.
Hey, look – I wrote some books!
- PT = Physical Therapy/Therapist
- VT = Vision Therapy
- OT = Occupational Therapy
- ST = Speech Therapy
- PCP= Primary Care Physician
- N = Neurologist
- NP = Neuro-Psychologist/Psychiatrist
- RMD = Rehab Doctor
- PDG = Pokey Doctor Guy/Gal a.k.a. The ENT
- OD = (Neuro) Optometrist/Opthamologist.
- CMD = Chinese Medicine Doctor
- The 1st Hospital = OHSU = Oregon Health & Science University
- The 2nd Hospital = Vibra Specialty Hospital of Portland
- The 3rd Hospital = The Rehabilitation Institute of Oregon (RIO – Therapy Boot Camp)
- The Place = The 4th Hospital = The Adventist Rehabilitation Hospital of Maryland (ARHM – my first as an outpatient; I learned to walk – and lots of other stuff – here)
- The New Place = NRH Montrose = Satellite Branch of Planet Rehab
- Planet Rehab = The 5th Hospital = The National Rehabilitation Hospital (NRH – located in D.C.)
- Tanpo = Dad
- Baker Smurf = Mom
- Ernie = my big brother, m. Ruth (Ruthie, I immediately recognized the value you bring to our family), their kids are Karine & Ezra.
- Ai Ai (aka Boo Boo) = my big sister, m. Tim (Timmy, I have to admit, you’ve grown on me. See – I put it in writing! 🙂 their kids are H &J
- Ed = my stuffed horse, Recovery Buddy, President of the Mommy Fan Club and my Spokesperson.
- Trainer D = my Personal Trainer – he got me kicked out of Rehab
- Coach R = my Athletic Trainer – he saved me from having to be alone with Trainer D
- Smurfette = my Dietician; Trainer D’s lovely wife
- Gen = my astonishingly talented Massage Therapist
- (Ninja) CMD = my Traditional Chinese Medicine Doctor – for acupuncture etc.
Please note, especially if you’re sick: Being sick isn’t a walk in the park. There is so much heavy lifting for you and your caregivers, and I’m sorry you have to jump through so many hoops. One of the most frustrating things for me while I was still hospitalized and didn’t fully understand what had happened to me was the constant temptation to compare myself to other patients, e.g. How is it that this man arrived after me and is going home before me? or Why can she walk and I can’t? So I try not to compare anymore, and am asking you to do the same. If you’ve found my site/blog because you’re at the end of your rope and are researching courses of treatment for yourself, remember that worked for me may not work for you, and what didn’t work for me might be fabulous for you. Please do your research and choose what’s right for you – every situation is different. You can just use my writing to laugh at me hitting myself in the head or losing my marble. In the meantime, I’m wishing you a fast and full recovery.
Your blog is pretty interesting. It’s great to see someone with such a positive attitude after/while going through so much! Could you comment about the location of your AVM and its size? I am continuously researching since we found out my daughter has one in her brain. Since they are so rare and random in location the effects also vary greatly. Thank you for being another voice in the small -but seemingly growing- AVM community. I wish you all the best in your recovery journey.
(PS the recipes are a nice touch -will be trying the zuchinni brownies soon!)
Hi, Heidi – mine was around the cerebellum near the brain stem. Sorry, I don’t know how big it was – but let me recommend AVMSurvivors.org. There are many resources for AVMers and their parents, too! Wishing you and your daughter all the best. Thank you for stopping by!
I’m so glad you have this blog on when you were first sick and what you said at the bottom to sick people. After what I wrote you a few day’s ago concerning 19yrs. of illness, and said no one but you and someone else only wrote me when I was sick after 19yrs. Forget all that please!!! I now say for these light and momentary affictions are but for a moment. they are working for me a far more EXCEEDING ETERNAL WEIGHT of GLORY!!!! I rather have Jesus than anything this world could offer me. No sickness is not my choice, BUT THE LORDS WILL BE DONE!
Thank-you for your blog on the first time your sickness started, and how. Also Mr. Rockerfeller was good to.
Love your blog, just found about it recently. Only wish that I came across this sooner. I had an AVM in 12/15 and was 1 month pregnant with my first child at the age of 35. Dr. A. Dogan at Ohsu operated on me, after waking up they sent me to Rio at good Sam. Unfortunately I got kicked out before any recovery. With God graces, my baby and I are healthy now. I’m able to walk minimally with a single point cane and desperately seeking OT (a good , enthusiastic therapist I hope) to regain my arm/hand. I’m looking to check into RIC rehabilitation of Chicago. I’m dropping buy to say hi and introduce myself. It’s nice that you have this blog and a book on Amazon. Best to OUR recoveries! Mai.
Hi, Mai! Thanks for checking in. I am so glad to hear you and your baby are well and that you’re cruising around with your single point cane even though you didn’t get to stay at RIO. I stayed at RIO and they were good to me; before that it was VIBRA, and before that it was OHSU – Dr. Dogan saved my life, too! I have another AVM Survivor friend in Oregon who got his bone flap fixed by Dr. Dogan. I went back to see Dr. Dogan in 2014 (3 years after my bleed. He is SOOO nice. And I was a lot nicer this time, too. The first time I met him I had only been awake for a couple weeks and was still an inpatient at RIO. I was not very happen to find out he was a real person.
I hope you get into RIC and get a fabulous OT! 🙂 atnt